An ongoing dialogue on HIV/AIDS, infectious diseases,
June 12th, 2016
Progress in Lyme Disease Badly Needed — Could a “Hackathon” Help?
Someone recently asked what keeps me, a specialist in Infectious Diseases, up at night.
With the admission that I do all my clinical work here in the USA — a person working in the tropics would undoubtedly have a different list — several challenging patient care and public health issues came to mind. Multidrug-resistant bacteria. Endovascular infections in patients with opiate addiction. Surgical infections with poor “source control”, especially in the abdomen. Non-tuberculous mycobacteria. Recurrent C diff and MRSA. Patients who, despite having access to lifesaving HIV therapy, don’t take their meds. An aggressive, transmissible flu strain arising from our close contact with birds or pigs. Aedes albopictus starts transmitting dengue, chikungunya, and Zika. Drug prior approvals that defy medical common sense. Electronic medical records that force docs to become overeducated clerks.
And, of course, Lyme Disease.
I’m far from alone about this concern, by the way. In an effort to make some progress against this challenging infection, a “healthcare hackathon” on Lyme will be held in Cambridge June 17-20, led by the Dean Center for Tick Borne Illness. And if you’re wondering what a healthcare hackathon is, one of the Dean Center’s doctors kindly shared this review — it’s essentially it’s a way of bringing together experts from multiple fields to work together and tackle a problem.
This approach makes abundant sense, as solutions to complex problems rarely come from a single discipline.
And boy, is Lyme the very definition of a complex problem, a keep-you-up-at-night topic — allow me to list why:
- Lyme has become way more common. When I became an ID specialist in the early 1990s, most of the people we saw with with Lyme lived on or near the coast, or had visited Cape Cod, Nantucket, or Martha’s Vineyard; now we see Lyme acquired throughout New England, and even in urban areas. It is spreading from the Northeast and Midwest into the South, and it no longer disappears completely in the winter — all it takes is a prolonged warm spell, and a few cases pop up. Here are the numbers per CDC — there are 300,000 cases/year in the USA, a substantial increase over the last 3 decades, and no doubt an underestimate since many cases are not reported.
- Severe Lyme Disease is a bad problem. Yes, most cases of erythema migrans respond promptly to therapy; there are even people with positive tests who have never been treated and feel totally fine. That’s the good news, the mild end of the spectrum. But rarely, especially (in my anecdotal opinion) for those who get sick and delay diagnosis and treatment, Lyme can be very serious — high fevers, cardiac disease, hepatitis, arthritis, encephalitis, meningitis, neuropathies, radiculitis, myelitis. And these severe cases are those most likely to have residual symptoms after treatment.
- There is no proven optimal treatment for patients with ongoing symptoms after Lyme. Some people think it’s best to try more antibiotics, targeting residual active bacteria. Others (read: most ID doctors) think that’s not a good idea, for four main reasons: 1) The scientific data on residual living spirochetes after treatment are far from definitive; 2) Several controlled clinical trials — most recently this one — show no benefit long-term antibiotic therapy; 3) Post-infectious symptoms may occur after many severe infections (bad influenza, sepsis, endocarditis, pneumonia, toxic shock syndrome), and we don’t give long term antimicrobial therapy for these conditions; 4) Antibiotics can be harmful — a colleague of mine notably had a patient who required a colectomy after developing C diff on a prolonged course of ceftriaxone prescribed by a Lyme specialist. Still — if we’re not giving antibiotics, what are we offering? To quote this excellent editorial that accompanied the above cited clinical trial — “Though prolonged antibiotic therapy is not the answer, we do not know what is truly helpful.” (Emphasis mine.) No wonder our patients are unhappy!
- Testing for Lyme is confusing, sometimes inaccurate, and slow. Think how accurate HIV testing has become — sensitivity and specificity are way north of 99%, false-positives and false negatives extremely rare, and generally quite easy to sort out with supplemental tests. HIV test results are back quickly, either right away with a point-of-care test, or at most a few days. Lyme testing is the opposite — early in disease, antibody testing lacks sensitivity; later on, the two-step procedure of screening ELISA followed by Western blot is fraught with false positives (especially IgM immunoblots) and, according to some, false negatives. Delays in receiving definitive results are common, and labs do not all have the same criteria for positivity. Molecular testing with PCR is of limited accuracy (even in acute disease), and follow-up Lyme antibody tests after treatment don’t provide proof of cure. The problems with standard Lyme testing have spawned a variety of “home brew” alternatives — here’s a terrific brief review — and note that none of them is FDA-approved, many require that desperate patients pay out of pocket, and all add to the confusion about who does and who does not have the disease. Thank you very much. (That was sarcasm.)
- Instead of cooperation, there is pervasive rancor in much of the discourse on Lyme. For whatever reason, the difficulty in prevention, diagnosis, and treatment of Lyme has created conflicts between patients, providers, and public health officials — a conflict far different from other challenging diseases. For example, the documentary Under Our Skin repeatedly attacks the medical community for ignoring the disease, and promotes numerous unproven diagnostic tests and treatments. There are several unfortunate results of this conflict, but one of the most discouraging from my perspective is the very speciality that should be front-and-center in trying to solve the problem — Infectious Disease — is repeatedly attacked; under that attack, ID doctors sometimes dig in their their heels on these controversial issues, or ignore them entirely, and the discourse stops. One can read opposing views on this from activists and IDSA here and here, respectively.
This last item (the controversy) is the reason why, for the last several weeks, a green flyer promoting the Lyme Hackathon has been posted in our clinic, and I’ve kept a copy on my desk. Notably absent from the pre-meeting materials are attacks on either side of the debate — a refreshing change from the usual harrangues.
I wish them the best of luck — we are all hoping for some progress!